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New member looking at adjuvant RT but struggling with continence.

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Posted 1/12/2014 2:54 PM (GMT 0)
Hi everyone, I've been lurking and learning for a few months and thought it's time to share my experience. You can see the specifics in my signature.

My 3 month post-op PSA is 0.2 which is not good. I'm still going through about 6 pads a day. I've been patient and doing PT and the kegels knowing it can take several months to regain "full" bladder control.

But now, I'm faced with likely needing RT sooner than later, but it's my understanding that the RT will complicate the incontinence and it's advised to regain bladder control prior to RT..

Just thought I'd introduce myself and see if anyone has been in this situation and has any thoughts to share.

Gave your thread a title. Welcome to the forum!

Post Edited By Moderator (PeterDisAbelard.) : 1/12/2014 8:24:17 AM (GMT-7)

Posted 1/12/2014 3:32 PM (GMT 0)
Hello Jazzed,

Welcome to the forum. Sorry you find yourself here but glad you found us.

I've been there.

As my doctors explained it to me they like to finish adjuvant radiation within six months so we could wait a while for continence to return but not forever. In my case we waited as long as we could then went ahead and zapped me. Guys do still manage to get dry after adjuvant radiation but it is a slower and more difficult process.

It will be up to you and your doctors how long you should wait to see about continence. I came out of surgery a Gleason 9 so there was considerable urgency in my case.
Posted 1/12/2014 4:00 PM (GMT 0)
Jazzed,

Welcome.

After my surgery I was almost completely incontinent. Even after 2,3 months it wasn't really improved. I was getting really frustrated and especially so because I was gearing up for adj radiation. Oddly enough, it did a 180° by the time my radiation was completed.

It takes time.
Posted 1/12/2014 4:36 PM (GMT 0)
Don't know why my signature didn't show up but here are my specifics.
Posted 1/12/2014 6:13 PM (GMT 0)
Welcome to HW, the place no one wants to be but it's a great place for those who need.

The problem with RT and continence is that during the radiation treatments you have to drink a bottle or two of water and hold it for at least an hour. This is to keep the bladder full and minimize any radiation exposure to the bladder. It's hard enough to do before surgery, after surgery and before you've regained continence it's just a little more difficult. Also the radiation itself will give you a bit of urgency issues and can set you back a bit.

Looking at your numbers I can see why you'd want to do the radiation. I do think you could wait another month or two before starting to give things more time to heal up and get the continence in control.

What have your doctors said about when you need to start RT? Also has there been any discussion of HT? you might need both radiation and the hormone thing.

and the signature doesn't automatically show up when you do a new post, look at the options below the edit window and you'll see a click box to include your signature. With replies the signature is automatic.

Hang in there and keep us updated on your progress.
Andrew
Posted 1/12/2014 6:42 PM (GMT 0)
Andrew,

Good point...a point I have put out of my mind...but yes, I could not walk from where I was sitting, drinking, and waiting and getting to the radiation table without major urinary issues (or however you want to phrase this...). It was so bad the first 2 weeks or so that they gave me a clamp (another piece of equipment I have forgot about)...but like I said, after about the 3rd week...it got better, and didn't need it.
Posted 1/12/2014 7:20 PM (GMT 0)
At about 2 months after LARP, literally overnight went from 6 pads to 2 then 1 pad a day (with normal urination). That lasted a week, then back to 6 pads. Puzzled the urologist and the PT therapist.

Andrew, I haven’t had the discussion with my doctor yet about next steps. I spoke to her Friday and am getting the PSA retested and checking for a UTI. I have an appointment the week after next to talk about next steps (RT, HT, etc). I understand it is important to have the RT done with a full bladder. It’ll be a challenge but manageable even if I have to go with a clamp as Jerry mentioned.

Thanks for the input. I’ll let you know how it goes.
Posted 1/12/2014 8:03 PM (GMT 0)
Jazzed,

I'm so sorry that you're caught between a rock and a hard place.

Seeing from your signature that there was cancer at the bladder neck, I wouldn't be surprised that your surgeon had to cut it close there and wasn't able to fully preserve it, perhaps with damage to the internal sphincter. It sounds like you are doing all that you can with the PT and kegels, which will with time give you better control of the external sphincter at the pelvic floor.

The positive margin at the bladder neck with Gleason 4, and the presence of tertiary Gleason 5 means that there is risk in waiting. Perhaps your doctor will want to start you on ADT now, which might prevent further cancer growth and might give you a few more months to recover continence before beginning adjuvant radiation.

Perhaps you can talk to your doctor about adding pelvic floor electrical stimulation and biofeedback to your regimen to hasten the recovery process. In one study, adding these techniques and beginning them soon after catheter removal hastened continence recovery, with 63% of men regaining continence after just 4 weeks, compared to 30% among men instructed to do pelvic floor muscle exercises. Another study that started after a year of incontinence showed no incremental improvement to biofeedback and electrical stimulation, so it may be that starting early is important.

Here's the study:
Early Recovery of Urinary Continence After Radical Prostatectomy Using Early Pelvic Floor Electrical Stimulation and Biofeedback Associated Treatment

- Allen
Posted 1/12/2014 8:12 PM (GMT 0)
Allen,

Thanks for the reference. As much as I want to avoid HT, a few months to give the urinary control to improve may be worth considering. I'll be sure to ask about both the HT and the electrical stimuation.

Thanks
Mike
Posted 1/12/2014 10:39 PM (GMT 0)
Mike
I feel the same as you about HT but I'm stage pt3bN0M0 with SVI and expect to need HT then RT if my PSA increases to .2 for two successive readings. Last one was .1. I'm totally dry after 13 weeks so I don't have to worry about starting RT. But RT alone won't work for me.
Bob
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